Festschrift: Professor Jenkins

Ethical issues and Huntington's disease

Jennifer G R Kromberg, Tina-Marié Wessels

Abstract

The practice of genetic counselling gives rise to many ethical dilemmas, and counsellors need to be familiar with the principles of biomedical ethics. The primary principles include respect for autonomy, beneficence, non-maleficence and justice. A case of identical twins at 50% risk for Huntington’s disease, in which only one twin sought predictive testing for this dominantly inherited disease, created several ethical dilemmas. Another case where predictive testing was carried out on two young children, at high risk, by a laboratory at the request of an adoption agency and a doctor, with a view to giving information to the foster parents, also posed many ethical conundrums for the counsellor. The ethical issues that arose in these cases are discussed in this paper.

Authors' affiliations

Jennifer G R Kromberg, Division of Human Genetics, Faculty of Health Sciences, University of the Witwatersrand and National Health Laboratory Service, Johannesburg, South Africa

Tina-Marié Wessels, Division of Human Genetics, National Health Laboratory Service and University of the Witwatersrand, Johannesburg, South Africa